I am writing this within an hour of saying a final, teary goodbye my dog, Bryn, and doing that dreaded walk out of the vets – the one with the folded-up lead and the collar in the hand.

Bryn, the day I got him.

(Note: I started this a week ago, but have held it back, and made edits and additions, to include it in #literaryspoons. But most of it was written upon returning from the vets.)

I ‘rescued’ Bryn in 2014, a week after the 14-year-old collie I’d had since a puppy died, leaving me in an empty house without my long-time companion.

I got Jake, my previous dog, in 2000, just before getting married, and shortly after I’d been diagnosed with M.E.. The medical advice I’d been given was to try to walk daily, so a dog made sense. I’d had to give up my career as a designer at The Guardian in early 2000, and I’d also had to give up playing football in 1999 (the time of my diagnosis), while still in my twenties, having been a semi-pro just a couple of years earlier. I haven’t played any sport in nearly two decades, when that’s what I did virtually every day for the previous two decades. (Every break and lunchtime at school and college. After school with mates. Training and playing with teams, and partaking in works’ five-a-sides.)

At that stage – back in ’99 – I would have terrible symptoms after playing a game: the need to immediately sleep for hours; followed by days of headaches, heavy-leggedness, muscle pain, insomnia and IBS until, half a week later, I was able to train, and a few days after that, play another game, if hyped-up on Red Bull. It was strange, as I was physically fit – brilliantly “conditioned” – but also falling apart.

At that stage I was increasingly picking up recurrent upper respiratory infections or viruses, and having my tonsils out aged 25 only helped for a while. Either way, for most of the 1990s I was on antibiotics every other week.

By the time we got a puppy in 2000 I was still able to walk him 2-3 miles a day, at a steady pace. After giving up work and sport, as well as alcohol and various foods, I felt ‘okay’. As long as I avoided stress or overexertion I could keep on an even keel, physically, but I was also in denial about the depression that came with the loss of my health and my male identity. I was no longer the two things I’d defined myself as: a good footballer, and a good designer. I felt lost.

I was also no longer a breadwinner, an issue that men struggle with, whether or not their partners work. Half of losing your career is the love of your job and your productivity; the other half is that you are no longer a financial contributor to society or your relationship. My sense is that a woman may help support a man, but that for most it’s subconsciously ‘unappealing’, in the way that men have subconscious issues about what they want or expect from women (all of which is discussed brilliantly in Brené Brown’s work on the topic of shame, in her various books, and the social pressures both sexes put themselves and each other under. View her Ted Talks here.). Men are supposed to be physically strong and active – evolutionarily there’s nothing appealing to women about unproductive weaklings, even if some women are willing to help take care of them (and women are generally more compassionate than men).

It also doesn’t help either party in the relationship if the man gets depressed and becomes a pain in the arse.

I was no longer a socialiser, out with mates having a few beers, even though I was never much of a drinker after I left college. (Some raucous drunkenness may have occurred before then.) I no longer had the community of like-minded workers around me, which had been the best part of working at The Guardian. I no longer had the kudos of praise and unexpected pay rises, or a sense of purpose.

Gradually, without being aware, I slipped into a bad state mentally, but only after the initial relief of being freed from the rat-race; as well as freeing my body from the overexertion it was shutting down from, and which was making me feel so ill that I’d sometimes cry on a Sunday night, unable to foresee how I’d find the energy for the next day, and unnerved by what my body was doing.

I’d had the symptoms of M.E. since at least 1991 (first signs of post-exertional malaise, aka PEM, plus the first issues of insomnia, IBS and visual deterioration on bad days), but they were usually very mild if I was taking life easy.

But with every passing year it became obvious that something deeper was going on, and I couldn’t keep pushing myself past my limits. I needed caffeine to get going, and sleeping pills to get to sleep – because the exhaustion was not tiredness (oh sweet, embracing tiredness that comes to help with peaceful sleep!) but a horrible fatigue that was highly uncomfortable, restless and at times painful. I lived and slept an artificial life.

My marriage ended in 2002, half a year after our wonderful son was born; the stress had got too much. I’d gone back to work just after his birth, to a new job in Leicester (where my wife lived; it made sense to live there too), and after a couple of months I was shattered; I moved to part-time role within the same low-key council office, and a couple of months later I was once again shattered.

In those early months I spent a lot of time fretting about the things I would be unable to do with my son, and my fear – given that my health seemed to continually worsen – that I’d be bed-bound within a couple of years and miss out on his life.

I’m writing this fourteen years on, and I’m still not bed-bound, but I am increasingly housebound. I never did get to kick a ball around with him when he was young, and as such he doesn’t share my interest in sport. And while the severity of my illness has yet to peak in the manner feared, it’s depressing to think that I’m still ill, and still more ill than I was back then.

Every week since getting divorced I’ve had my son two and a half days a week, and most of my energy has gone into those days – Saturdays, Wednesdays and part of Thursdays. The rhythms of my energy have had to ebb and flow to that pattern.

I spent the first couple of years after the divorce on incapacity benefit, acutely aware that I could not work for anyone else, and that even working for myself – as I tried after leaving The Guardian in 2000 up until my son was born in 2002 – involved the pressure of dealing with other people’s demands and deadlines. Once our son was born, working from home also became too chaotic.

(Within a few years I’d no longer qualify for benefits anyway. I applied again several years later, when my health dipped, but passed a test where I could touch my toes, point to the ceiling and walk 400 yards. Seriously.)

Then, in 2005 I published my first football book, which I’d been encouraged to write by my readers after years blogging on the game. Going to the football with my mates had been my Saturday (and even midweek) regime both before and after my stint as a semi-pro, and playing football on a Sunday had been another social outlet. But by 2005 I rarely made it to watch a game anymore (partly due to my health, partly due to looking after my son on a Saturday), and I certainly couldn’t play; so writing was something that was relatively easy to do whilst chronically ill.

But books aren’t very profitable unless you are a bestseller; even selling 15,000, as I did with my first of what is now a dozen football books (helped by fortunate timing with regard to subject matter 11 years ago), saw me barely match what I made on benefits, which in itself did not fully cover my rent and my food and utility bills (my parents had to top it up).

In the coming years I wrote all those other football books, most with a diminishing return; and with a lot of stress involved in trying to pay the bills, especially once sales, after the first month or two, became sporadic and unpredictable. I turned down a lot of promotional opportunities, including interviews on sports TV, because I knew it would compromise my health; and there was no way I could work as a writer for anyone else, given the unpredictability of my health (and the way that the fatigue becomes cumulative, with the myriad other symptoms making it that much harder).

I only started to make a proper living as a writer in 2009 when launching my subscription-based Liverpool FC website (The Tomkins Times, aka TTT), with the income finally both sufficient and spread evenly over the year. For the first time, I was even able to start saving, in the hope of one day getting a mortgage.

As recently as 2011 I would say that, my health aside, everything was going brilliantly as middle-age approached. TTT was doing far better than expected, and I’d just rented a lovely ex-farmhouse with my girlfriend of four years. She had fairly severe M.E. (and before that, genuinely severe M.E.), and we’d met via a very small M.E. forum. My son was still at primary school; my dog was still as lively as a puppy; and my parents were doing well – and, like me, had moved up to the midlands from London. My partner and I were living right on the edge of the countryside, in a house we could never afford to buy but where the rent was reasonable, and with my son with us for part of the week, we made for a great little (modern) family unit.

Since then, however, it’s been one loss after another. Recently I discovered a book by Judith Viorst called Necessary Losses, and it has helped me to realise how much time we spent avoiding this inevitable fact of life.

We all lose people (and things, living or otherwise) from our lives, but the timing and severity differs. I feel like I’ve had a bad five years in terms of loss, but I also guess that the longer you live the more there is to lose. After all, few people live to be a hundred and still have living parents. Some people die young; but everyone else doesn’t escape it forever. You will experience loss, because it’s a fact of life. Five years ago I had no experience of cancer, and since then I’ve lost my dad and two dogs to it.

For me, it began with the loss of my health, which led to the loss of most of my social life and most of my physical powers. Instead of being strong, I was clearly weak.

By 2011 I had got used to that, even if, on some level, it still wasn’t fully processed. But then came the loss of my dad, who’d been diagnosed with adenocarcinoma (basically, cancer that spreads everywhere through the glands) in 2009, but despite being 82, was still going strong two years later. Somehow it just didn’t seem to do very much, at least until the summer of 2011.

Then he suddenly went downhill, but even then it was dragged out over six months – losing weight, losing strength, before eventually losing his faculties – and he died that Christmas, after five days in a coma.

By then I had taken on people to help with TTT, which obviously made it less profitable to me; but they were good people with their own illnesses (or were looking after a chronically ill partner), and I wanted to make sure that those paying to subscribe got extra content rather than just relying on my input. I didn’t realise that I was swapping the pressure of having to produce all the content for the pressure of having to provide people with their sole form of income; neither of which is helpful in terms of my illness, but there is no alternative.

Still, I threw myself into my work upon my dad’s death, which had brought up a lot of childhood memories (happy an sad) and hit me with the idea of my own mortality, as I’d just turned 40.

I guess I came to understand the concept of a mid-life crisis, in how you can find yourself marooned as if in a rowboat on the vast ocean – no sign of where you came from, it’s so distant from the shore you left behind, and no sign of where you’re going. (As an aside, I remember seeing this metaphor used for writing a book, in how you’ve lost the initial burst of energy, but when you don’t yet have the reassurance of the end in sight. I suppose it applies to any task that takes a lot of time and effort. Like life, of course.)

My health continued to suffer, and then my relationship began to suffer too. Stress is like a carbon monoxide leak in that you don’t notice it; it just builds up, and then you’re done for. It made me irritable, and at times unlikeable (to my partner, and certainly to myself). I was getting weaker, and my self-esteem was crashing.

In 2013 we split up – which was devastating – and I used my savings (that I’d been putting aside for our future) to get my first ever mortgage, on a simple house closer to my son. That was my sole priority (not that I’d lived a long way away, but I wanted to be within a short walking distance.) In the process I found out that my account, a Mr Peter Coles, was a convicted fraudster who hadn’t advised me correctly (here’s a newspaper article I wish I’d read before it was too late) – and that on top of the taxes I’d been paying, I owed almost £30,000 in back-taxes and fines I had no idea I was in any way liable for (and which was money I’d been budgeting with to pay staff). This almost ended my hopes of buying the house, and also almost crippled my business.

As it is, running a business with a chronic illness is many times tougher than it is without one; indeed, everything with a chronic illness is doubly or trebly difficult, if not more so (and in many cases, simply impossible). Entrusting someone who turned out to be a sociopathic liar only made it harder.

And perhaps hardest still is to be in a relationship when you’re both ill, although even just one of you being sick makes for a struggle.

With my football writing now a vocation (which definitely takes some of the fun out of it), I continued to chip away at my first novel, which became my hobby, and the thing about which I remain most proud.

In 2013 I procured an excited agent, who loved the book, but twice she changed her mind on its commercial prospects, and declined to take it to publishers, as much as she herself (and her staff) thought it was great. As the metaphorical lifejacket onto which I was clinging, the timing was awful. (After a year of delay, I later decided to publish it myself, and it has sold over 10,000 copies and been awarded the Kirkus Star. Again, it’s not been very profitable – with the costs incurred I probably broke even – but the other rewards have been great. However, I didn’t know that back in 2013, mind, when my agent first stepped away.)

A few months later, early in 2014, my beloved dog Jake had to be put down in the middle of the night, after a sudden illness led to internal bleeding. My son was by now a teenager, and no one ever explains to you the grieving process of losing the kind of relationship you have with your child when they are younger, before they become more independent (as you’d want, of course – the aim is to help them become normal, capable adults, not keep them in a child-like state for their whole lives. But it still hurts to no longer feel as necessary).

So I got Bryn, a zen-like Collie (who never barked and happily sat by the window looking out at cats) in the spring of 2014, after a week spent mostly alone inside an empty house, the missing heartbeat evident in the total silence and stillness. I’d lost count of the times I’d gone to let Jake out, before realising there was no longer any need to open the backdoor or fill his water bowl. (Within an hour of Bryn dying I had already gone to do that.)

I was told that Bryn, who’d apparently gone from a Welsh farm to a vets, then onto a rescue centre in England, was three years old, although he looked much older; but maybe he’d just been out in the elements a lot. Within a year it was clear he was actually a fairly old dog (I guessed at seven or eight), albeit still sprightly. Turns out he was probably even older when I got him, given that the vet said he was between 10-15 upon his final visit.

Is that a cat I see before me?

But it suited me that he was very relaxed and, short walks aside, happy to just lay by the front door looking at the neighbour’s cats, or following me around in the hope of a biscuit. Upon his first visit to my mum’s house he sat down for an hour staring at a painting of a cat.

(I tried throwing a ball for him to catch but he just watched as it hit him in the face. I then threw the ball down the garden and he just looked at me, as if to say “what on earth did you do that for?” Seems you really can’t teach an old dog new tricks.)

Four weeks ago his glands on his neck swelled up almost overnight, and three weeks ago I got the diagnosis of lymphoma. His glands continued to swell, to the point where they were literally apple-sized this morning. With painkillers he seemed okay and retained his appetite, but without them he was listless and disinterested in anything. So the time had come to make the dreaded decision. I wondered if I was doing the right thing, but at the vets he just lay on the floor as they looked him over, as if to say “I’m ready to go”. He didn’t flinch when they put the cannula in, and it was clear he’d had enough.

Losing a pet is tough, as anyone who has been there will know; and many who haven’t may never understand. But when you live alone – as I do, effectively like an old man, but aged 45 – they become your trusted companion. I imagine that most chronically ill people rely on the warmth and unconditional love of a pet, especially in a world that appears to be losing its mind.

And so here I am again, alone in the empty house. (The heating has just clunked, and I thought “Oh, that’s just Bryn sitting down by the radiator”.) Middle-age has been an utter bastard to me so far, with my health continuing to decline ever so slightly, year after year, with the occasional upturn here and there. Life just seems to get harder and harder, and it’s probably not helped by social media, and the plethora of people living apparently perfect lives (which even if you know not to be true, still leave a sense of missing out. If healthy people have FOMO, the chronically ill have FFOMO, complete with an additional F-word).

As noted earlier, I am still not bed-bound – so I still haven’t experienced severe M.E. – but I have less confidence leaving the house for an extended period of time, and although I still drive, I only feel comfortable over shorter distances; anything longer, on the occasional times I’ll go somewhere beyond the midlands, I need to break up with an overnight stop. (In early 2015, during a good spell, I made it all the way to Iceland, for a week, to research my second novel – and even though I had to cancel half of my itinerary once there, and spend three days in a hotel room overlooking the sea rather than seeing the sights, it was worth the pain and the payback. But those levels of moderate energy seem a long way away.)

And of course, I cannot avoid further losses in my life. I’ve lost family, and since just 2014, two beloved pets to death; and in other ways lost careers/jobs, friends, hobbies and most physical abilities beyond walking.

For the most part I still don’t feel in any way beaten by life, and understanding that losses are inevitable is important for some mental stability; I don’t think “why me?” because losses come to us all. I am not unlucky, and bad things do not single me out.

But it can be tough, and gruelling, to keep getting back up, time and again, when lacking energy and when aching all over, and with little to look forward to.

(And in the week since Bryn died I’ve felt the numbing weight of depression – taking away the strong motivation that I’ve had for most of my time with M.E.. I’ve experienced M.E. when happy and sad, buoyant and depressed, and it has caused the same symptoms at all times. So it is definitely not depression, but depression can add a layer on top. I started writing this piece with a sense of grief, and a need for catharsis, which was motivating; but since then I’m really having to force myself to do my daily chores. Hopefully this is just stage four of the Kübler-Ross model on the five stages of grief. Of course, the state of world politics is also pretty god-damned depressing, and being chronically ill is pretty god-damned depressing.)

At this point, after all of the losses – of people, pets, and of my physical health – I’m definitely in the mood for some gains.

This is because I just don’t get the chance to do it in person anymore (not that I go around telling friends that I love them anyway – I don’t live in an American sitcom). Not only do men my age tend to lose touch with friends (we don’t keep in touch as well as women do), but it’s amplified when you also have M.E. and mostly only leave the house on errands.

Unlike those more seriously affected, at least I do get to leave the house (and do so without assistance), and occasionally I’ll have the energy to do something more interesting than go to Sainsbury’s. But the PEM (post-exertion fatigue) often makes it a gamble not worth taking. As I get older I find my symptoms worsen upon less and less exertion. More and more time has to be built in to anything I do, as I have to rest up beforehand (a day out would need two days rest in the lead up to it; an evening out a whole day’s rest before venturing out), and allow time afterwards – when I will, without fail, feel like I have the mix of the flu with a bad hangover, despite not drinking.

I haven’t seen most of my friends in years – indeed, between three and ten years in most cases. Bar one exception they do not live locally and travelling to see them is hard work – a weekend away could take a week to recover from, and with my football writing and running a business (The Tomkins Times website I created for my own writing but which grew to employ other people) I just don’t have anything left in the tank. Still, I miss them.

Part of the slowing down may also be hitting my mid-forties, and it saddens me to think that the version of me that was diagnosed aged 28 (the last time I was able to partake in any sport) is long gone. My main aim was always to play football again and it seems that my best hope now, if I recover, will be the walking variety showcased on those bank adverts.

I’ve had to give up so many things I love, and whatever I can still do is that much harder. The internet has made it slightly less alienating – and I’m certainly not some unseen sufferer in that sense (so I’m not one of the invisible millions, lost in their bedrooms) – but the internet also shows frequent reminders of what is being missed out on. Today is #millionsmissing day, and this is my small token towards it (I wanted to write something better my ‘brain fog’ is bad right now). If I’m not totally absent, I am at least missing out on lots, and missing from my old social scenes. Weirdly, I still regularly have dreams about turning up to my old job at The Guardian, which I left due to ill health in early 2000, and everyone says “where have you been?”, or note that I have 16 years of work to catch up on.

Whenever I have a bit of spare energy now I work on my second novel, which is a form of catharsis. I recently celebrated passing 10,000 sales on The Girl on the Pier, which, along with the award of a Kirkus Star (and the many satisfied readers) has validated the effort – but it takes me much longer to write with an illness and other responsibilities. I enjoy it more than the football writing because it is not as dependent on external situations, and doesn’t arouse as much stress and abuse. It’s a peaceful process, and I get to go to places in my mind that I cannot in person. Life would probably be easier if I didn’t do this either, but it’s essentially my only hobby.

The good news is that after being detected in gene expression and various other biological markers in a huge number of (usually small) studies, M.E. has finally be detected in the blood, with evidence of a chemical pattern similar to a state of hibernation (“dauer”) experienced by certain animals when their environment is wiped out. Also, the PACE trial – which was a case of bad science bolstering unhelpful and even damaging treatments – has been debunked, with a court forcing the research to be made public. (On a personal note, I undertook the two recommended treatments – graded exercise and cognitive behaviour therapy – in late 2013, and found them temporarily helpful. But then I hit a wall, and my health is now worse than when I started. That said, I can’t state that it definitely made me worse, as my health was tending to get a bit worse every year anyway.)

So with lots of disconnected medical breakthroughs maybe there’s a cure on the horizon, or at least a better understanding of the condition. Even now I don’t mention my illness to anyone I meet in daily life as it’s too hard to explain, especially when I don’t look particularly ill. Like most sufferers no one sees me on my bad days – which involve muscle pain, headaches, dizziness, hot and cold spells, and other problems that go way beyond fatigue.

But here’s hoping. Maybe in the next few years we can all leave our various stages of hibernation and, instead of being missing, return fully to the world.

It is torture, of a kind. The unrelenting jab of needles into the spine. The vice clamped to the temples and tightened. The syringes slowly draining blood from the thighs, injecting concrete into the calves. Poison swelling in the stomach, pumping to the veins, tying knots in the guts.

You shake, but not in terror. Even the twilight is too bright. Movement sets flotsam and jetsam tumbling about the head; simply sitting up can be a struggle – postural hypertension sending you giddy. Sights and sounds take longer to travel to the brain, the neural pathways fogged and furred with white noise and static. You are death, ever so slightly warmed up.

This is M.E. as I sometimes experience it, and I’m not one of those acutely affected. I only occasionally feel this ill – usually after any kind of socialising or travelling, or perhaps following a sleepless night – but for some people this is a daily occurrence; indeed, for many it’s a lot more severe and unrelenting. I’m relatively lucky, in the way that a man who has lost one leg is luckier than a man who has lost two.

The symptoms – or sensations – outlined above are some of those I experience when at my worst, but at my best I can walk the dog over relatively short distances, and resemble a normal, fully-functioning human being, so long as I’m not asked to do anything that involves strength and stamina, or standing up for too long. When I’m well enough to be out, I look well enough, full stop. But I’m often somewhere in between the two extremes. I rarely feel good, but sometimes I’ll notice an absence of aches, pains and fatigue.

M.E. is a complex condition with many varied symptoms. A recent statement from the Stanford University School of Medicine said of the illness: “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.” (For more on the science behind M.E., see the Postscript at the foot of this piece.)

The unpredictability of the condition – which always strikes after exertion, but sometimes flares up for no apparent reason – makes life hard to navigate. It messes with your mind, blowing hot and cold; giving hope and then withdrawing it. You think you might be getting better, but you’re simply having a good day. You fear you might be getting worse, and suddenly it’s hard to remember what a good day feels like. Conversely, on your good days you forget what it’s like to be ill – so you push things, just a little – and then it returns, and you kick yourself for blocking out the suffering; like a woman forcing out a second baby, having screamed Never again! during the birthing of the first.

And this is just me; not someone who is bed-bound or only able to get about with someone pushing the wheelchair.

Lapsed

Much to my frustration, I don’t know how I became ill. For some people M.E. hits them like a speeding train at a level crossing. One day they’re fine, the next they are wiped out. Mine, however, approached more stealthily, like a carbon monoxide leak: the slow, insidious creep, spreading over me in imperceptible increments, until, after a number of years, I found myself faded and foggy. For the longest time I knew that something wasn’t right, but neither I nor a number of physicians could put their finger on it. Still only in my mid-20s, I was more tired than I should have been for someone so athletic; had more muscle aches and head pains than anyone I knew; had a sleep pattern that had gone haywire; and, to my horror, experienced rapid hair loss (although it transpired that that was merely the onset of male pattern baldness).

When did the problems start? Well, I was born with clear immunological issues. I had asthma, eczema and various allergies, none of which, as a baby, were put down to my imagination. Playing sport several times a day throughout my childhood kept me fit and healthy – if occasionally reaching for the inhaler – but I recall lethargic spells, and according to blood tests, it seems that at some point I had an undiagnosed bout of glandular fever.

I spent my teens and early twenties being fed course after course of antibiotics; at a conservative guess I’d say 50-70 different prescriptions, some for tonsillitis, some for chest infections, some for sinus infections, but many for what were probably just heavy colds and upper respiratory tract viruses, and therefore not treatable by the various ‘cillins’ eagerly pushed my way. I’ve probably had just two courses in the last 10 years, but I fear the damage was already done.

There’s only one single event I can recall that might have been a trigger. In December 1990, at the age of 19, I awoke at 3am with an asthma attack so severe I couldn’t breathe; as hard as I tried, and without a hint of exaggeration, I felt that I was getting no more than 1% of my normal oxygen intake (try sucking on a blocked straw for a vague analogy). My flatmates, awoken by my panic, rushed me to the nearby infirmary, where I was nebulised, given oxygen and intravenously administered steroids. I recovered, but only after a serious chest infection. I sometimes wonder if this was a contributing factor.

By the time I was in my early 20s I started struggling after playing sport, but could still take part. Weirdly, I noticed that my vision was much worse on the days when I had less than eight hours sleep (and eye-muscle problems are also symptomatic of M.E.). Around this time I found that I could no longer tolerate alcohol – I wouldn’t feel drunk, just strangely ‘foggy’ after half a pint, as if slipped a mickey.

I spent some time in my mid-20s as a semi-professional footballer, but could never quite get as fit as I felt I should be – as fit as I remember being – and between games I felt horribly lethargic, to the point where I was unable to train properly. Often I felt ill for 48-72 hours after a game, which included a three or four hour sleep within an hour or two of the final whistle. However, if I missed midweek training I felt less ill on match-days, but this was clearly not sustainable in terms of my general fitness. Needing to drink two Red Bulls in order to play football at the age of 25 was not a good sign. Within three years I’d have kicked my last football, at the age of 28.

Over the past decade and a half I’ve given up, in stages, most of the things I enjoy, because the payback isn’t worth it. With every passing year I am able to spend less time at the computer, writing, before my head fogs up and my eyesight blurs. But at the same time, the distraction helps keep me sane, and it pays the bills.

By comparison with some I am lucky, but I have become fairly reclusive, and definitely feel isolated. I work alone, from home (albeit running a website with a great community). It’s tough to maintain a social life and keep up with friends; while relationships, as well as being rewarding, can also be draining and doubly difficult. If I do a few hours’ work during the day I’m usually barely functioning by 6pm. If I ever want to go out in the evening, which is rare, I have to keep away from a computer and spend the day resting. Indeed, I feel analogous to my faulty iPhone 5, which needs several charges a day. It can do the basics okay, but try anything that requires proper processing power and the ‘I need electricity’ warning appears.

With M.E., everything has to be planned; to be spontaneous is to jump from a plane without a parachute, eyes blindfolded, and with no idea when the impact will occur. The crash will come, sooner or later. (Probably sooner.) You’ll be spreadeagled on a bed again before you know it. For those who are severely affected, just getting to the toilet can represent a true daily achievement. No one chooses to have this life. None of us are happy existing like this, because none of us are lazy or lovers of pain.

Serious M.E. is suffered by people alone at night, their body clocks set to a far-flung timezone. They sleep fitfully, or not at all, and then lapse into unrefreshing daytime slumbers punctuated by fugue states. It is a ghostly illness, all but invisible to the eye, and eager to turn skin to an equally spectral shade due to lack of sunlight. It takes healthy, active people – almost always those with great drive and motivation – and plants them as bed-potatoes. They themselves become ghosts, seen only by those who enter rooms darkened with blackout blinds. These are the lost people, obscured in the shadows. They feel helpless, hopeless and depressed.

And while my condition is not as serious as many sufferers I know of, it’s still very dispiriting. Indeed, it’s depressing.

But we are not merely depressed, with some people thinking that’s all it is; we simply have a natural reaction to frequently feeling awful, and get understandably low from giving up most of the things we enjoy (and in return, benefiting from none of the natural highs of endorphins and other brain chemicals). I would give up my career as a writer in a heartbeat to play football again (the one activity in which I’d totally lose myself), or do more energetic pastimes with my son, or to visit my family in Australia. But at least I am not housebound, or worse, bed-bound.

We’re not lacking energy and motivation because we’re depressed; we’re depressed because even the basics can be a drain. Our condition doesn’t go away when we are happy, or on those occasions when we’re able to have fun. And yet obviously anything in life seems a little easier if it’s enjoyable. Adrenaline will get us through on certain occasions, but the bigger the rush the worse we feel afterwards.

With inactivity our bodies grow deconditioned, but the alternative – to exercise, even gradually, to a set activity plan – is painful, and often leads to exacerbated symptoms. I began such a plan in the autumn of 2013, but more than a year on I’m not sure it has helped. I’ve had a few days when I was certain it was of benefit, and plenty more when it felt like a grave mistake. Overall I feel ambivalent about it.

Over time I managed to incrementally increase activity, convinced that I would get better, but it led to a worsening of pain and headaches, less refreshing sleep, and a return to the constant sore throats I had when I was younger. Every forward step in getting fitter – and I did feel some improvement in that sense – led straight to an immediate backwards step. I was getting fitter, but paradoxically felt more ill. It felt akin to doing fitness training in a gym next to chemical factory that has sprung a leak; the muscles and stamina improve, but the skin burns and the lungs inflame.

To ease off the activity plan is to lose conditioning once again, and with a loss of conditioning come symptoms similar to those of M.E. – and the vicious circle is complete. If you – the healthy reader – do nothing but lie in bed for a month you will feel like we do, grow weak like us. Just look at the astronauts returning from months on the international space station, and how they’re too weak to walk. They have to be carried from the return module like newborn babies. But if, like them, you try to get better, you will. We won’t. We know, because we’ve tried.

If, as a sufferer of M.E., you can avoid stress, depression, anxiety, poor dietary habits, late nights, alcohol and overexertion then you might fare relatively well. But how do you live without those pressures? Preparing healthy food takes more energy than zapping a microwave meal. If you work you will suffer from stress, and if you don’t work you will have no money, and suffer from stress.

The last time I claimed Incapacity Benefit I was asked to touch my toes, and reach into the air. Could I walk 400 yards? And finally, could I climb a single set of stairs? Such simple questions proved I was entirely fit to work, and the benefits were denied. Which would be great, if a day’s work was as simple as touching my toes, reaching into the air, climbing one set of stairs and then walking 400 yards.

Since then I’ve managed to make a living as a writer, but only by working for myself, at my own pace; and even then it took many years to make it pay. But running your own business is stressful, and while I am able to control some aspects of my work output, I can’t escape a lot of the difficulties that come with the territory. It also doesn’t help that I’m a creative ‘obsessive’, in that I need to be doing things with my brain otherwise I don’t feel like I’m actually existing. Writing a novel has helped me retain some motivation, as well as providing some catharsis through art, but it has come at a cost.

At times I feel like a cardboard man propped up by strong coffee, but its power to revive wanes with each subsequent morning, and before long it just brings tremors and headaches, and zero boost. In the days leading up to some social activity I’ll lower my intake, and spend the time resting (albeit with a guaranteed migraine); and then reintroduce the caffeine to boost my way through the event, along with natural adrenaline. But in general it gets harder. I’m not in my 20s anymore.

At times it’s easy to forget that ‘normal’ people feel tired too, although, of course, they often like to remind you. The key is the word chronic in Chronic Fatigue Syndrome (although we don’t like that name as the illness is not just about tiredness). No one says to someone with arthritis, “Yeah, but I also get aches and pains.” Everybody gets aches and pains. That doesn’t mean they have a chronic condition. Everybody gets headaches, but that doesn’t mean they have something seriously wrong. No one says “I get headaches too” to someone with a brain tumour. People with M.E. get tired, and get headaches, and have a lot of pain, and their experience of them is frequent and ongoing.

None of this is written as a plea for pity; merely a request for some understanding of perhaps the most misunderstood of all illnesses. There are people far more acutely affected than me; many of them with other illnesses, but also many with a horribly debilitating severity of M.E.. But they’re often not able to write about their plight, perhaps because they’re too poorly, or not a wordsmith, or simply have no platform on which to tell their story. I can share a taster of what it’s like, but unless you are feeling the same symptoms at the exact same time, it can be difficult for anyone to appreciate what someone else is going through.

How do you imagine a pain greater than you’ve ever experienced, or a torment wilder than your own mind has endured? I’m not sure that you can.

Postscript: Research Findings and Hope?

Researchers running trials are finding new evidence of M.E. in patients all the time, even if no single diagnostic test yet exists. In the past couple of weeks, three things have stood out to me.

A recent medical article on M.E stated:

“Studies on metabolism and CFS [M.E.] suggest irregularities in energy metabolism, amino acid metabolism, nucleotide metabolism, nitrogen metabolism, hormone metabolism, and oxidative stress metabolism. The overwhelming body of evidence suggests an oxidative environment with the minimal utilization of mitochondria for efficient energy production. This is coupled with a reduced excretion of amino acids and nitrogen in general.”

“Compared to healthy individuals, people with CFS have a diminished amount of white matter in the brain. White matter is composed of nerve fibers, which help connect the neurons in the gray matter that actually process information. CFS is believed to be associated with inflammation, which would cause this effect.”

There are loads of small studies finding such details, but as yet it hasn’t led to a completion of the bigger picture.

Finally, Dr Ian Lipkin is undertaking research in the hunt “for the causes of ME/CFS in the gut “microbiome” – the bacteria, viruses and fungi in the digestive system. Dr Lipkin has been described as “the world’s most celebrated virus hunter”, working at “the world’s largest and most advanced centre for microbe discovery and diagnosis at Columbia University in New York.”

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